: You Look A Little Pale
Warning – Long boring detailed medical story coming up . There’s a punch line at the end, but you have to read through the gory (literally) details . .
Back in 2005 I noticed that I was running out of steam walking up the hill from the train station on my way home after work. I chalked it up to age (Hey I’m 57, I guess I’m slowing down). However this was not the case.
At the time I had recurring sinusitis and was seeing an ENT regularly – Dr. LLoyd Zbar. At my next scheduled appointment Dr. Zbar checked me out and my sinuses were doing fine, but then he said “You look a little pale. I want you to get your blood checked for iron level.” Dr Zbar wrote out a prescription, I got tested, and sure enough my iron level was low. This was the single most brilliant medical diagnosis I have ever had direct experience with, and likely saved my life. But hang on for a bumpy ride. . .
OK – so low iron? Not to worry. Low iron is typically due to some minor thing in your GI tract – easy to correct. But after looking both ways (I’ll spare you the details) there was nothing obvious. However, they did find some sort of mass in my stomach, maybe an ulcer? I went to Mountainside Hospital next week and the docs did another more thorough test. The results were inconclusive. We went home and Lisa made me a nice sandwich. I had taken two bites when I doubled over in agonizing pain. Ambulance took me back to Mountainside ER, they doped me up and kept me overnight.
The next day they decided that they needed to open me up to see what was happening. Lisa was at her wits end – who was going to operate? She called Dr Zbar, he made a few phone calls and found out that Mountainside had assigned their best team of surgeons – the Barbalinardo brothers. The Barbalinardo brothers . . . Now if you had talked to these guys outside of a medical setting you might take them for auto mechanics – they were Jersey guys through & through. But they were also top notch surgeons and Mountainside’s A Team. The surgery was scheduled for early evening.
In the middle of all this, a new doctor came in and introduced himself: “Hi, I’m Dr. K. I’ll be your oncologist. Do you have any questions?” A WTF formed in my mind but I could not get it out in my drugged up woozy state.
Then surgery, a day & 1/2 in the ICU (I don’t recommend it), and back to a regular room. I was still on pain killers but I was coherent. The senior Barbilinardo came in and said “I have good news & bad news. The good news is that you do not have stomach cancer. The bad news is that you had a growth between your stomach and internal cavity – we had to take out half of your stomach”. In other words, I had the equivalent of gastric bypass surgery. The was truly ironic news. All my life I’ve tried to bulk up a bit and gain some weight, but I’m a skinny runt just like my dad and will always be one. Of all the people in the world who needed the equivalent of gastric bypass surgery, I was at the very bottom of that list.
Of course, having half a stomach meant that I had to change my eating habits. Before the surgery I was known for my ability to pack away food, but no longer. I now have to eat smaller portions more often. For the first time in my life I started eating a regular breakfast, then a few hours later I have my “auxiliary” breakfast. I cannot stuff myself anymore. If I overeat it is physically painful – so in a sense I’m living a healthier lifestyle than before.
But meanwhile, what was going on? What was this thing they took out of me? Dr K said that it was a GIST – a Gastro-Intestonal Stromal-Tumor. GISTs can return (i.e. they’re cancerous) but there is a medication called Gleevic which could possibly prevent its return – however Gleevic has side effects. So what to do? While I was recuperating Lisa did a bunch of reading/talking and found that the Dana Farber Institute in Boston had a whole department dedicated to GISTs, so we set up an appointment.
We drove up to Boston and met with one of the staff oncologists Dr M. Dr M looked through my chart and then gave basically the same news that Dr K had given, namely that there was Gleevic which had pretty good (but no guaranteed) results in prevent a recurrence of a GIST but that it had side effects. Now I had been doing some reading and said “I know a little bit of knowledge is a dangerous thing, but according to the medical journals, GISTs are typically caused by one of several chromatic abnormalities. Can we determine which abnormality it is?” At this point Dr M did a visible double take. “That’s a good point. We can send a tissue sample out to the University of Oregon and they can do a genetic workup, but that will cost you $10,000.”
Yikes. As Lisa & I were driving back from Boston we basically decided what the hell, this is my life at stake. We’ll take the money out of retirement savings if need be. We got home late in the afternoon, and not 5 minutes later we got a call from Dana Farber. “Hi, this is Dr M, I checked with my department head and we can cover this under your insurance.” 2 weeks later we get the results back – I had a “Wild Type” GIST. It turns out that “Wild Type” is a catch all description used when they don’t know what the hell this thing is – but more significantly it would not respond to Gleevic. So the only thing we could do was to watch and see if this thing came back.
And so began my regular trips up to Boston for CAT scans. 4x a year for first two years, 2x a year until 5 years, 1x a year until 10 years, then every other year. At my last trip up in June, my oncologist for last 15 years, Dr. G, said it was no longer necessary – if this thing had not come back by now, the odds were remote that it ever would. So yay! No more! But, but, but – do we still not know what this thing was you took out of me? Dr G thought about it and said if there’s any tissue sample left at Mountainside they would try to get it into a research program. So far no news.
Dr. Zbar retired several years back, but recently I bumped into him & his wife at the hardware store. I told his wife that Dr. Zbar had likely saved my life, and then Lloyd said “Eric, you look a little pale”.
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I can reasonably promise that you will not require surgery after coming to one of my gigs.
Saturday August 20, 8:00PM-11:00ish
Better Off Dead at Shillelagh Club
648 Prospect Ave, West Orange, NJ (973) 509-1134
Yes, that’s tomorrow night. As you drive along Prospect Ave at night, you may feel like you’re in the middle of a forest. But when your GPS says “you’ve arrived at your destination“, you will notice a parking lot lit up with bright green LED lights – which let’s you know that indeed you have arrived at a great destination. In spite of it’s seeming ethnic identity, The Shillelagh Club hosts many of the areas top blues and r&r/r&b bands. The club has excellent bar food (I can recommend the burgers) and a lively friendly mix of folks.
http://www.betteroffdead.com/home.htm/
https://shillelaghclub.com/